What Our Daughters Taught Us About Hepatitis B
When our family first began the process of adopting a child from China, we did so because of the special needs issue. We already had birth children who were very healthy and we felt so blessed...We knew we wanted to adopt a child with some medical concerns and so we chose our agency's China program.
Shortly thereafter, we bought a computer and had Internet access and began learning even more about issues relating to China adoptions, one of which was the possibility of the child being Hepatitis B positive. Initially, it scared us to death, mainly because we were uneducated and uninformed. But, because figures indicate up to 30% of the population of China may be infected with it, we learned some of the basic facts, though nothing detailed. We sent away for literature from various organizations and had it all neatly stashed away in a briefcase.
Our daughter came home from China and we had her at the doctor within 1 week after our arrival. The standard battery of recommended tests was run on her and everything came back "ok", for which we were grateful.
Six months later, we had her retested for Hepatitis B, as is recommended--for a child to truly be considered free from Hepatitis B, they need to have two negative Hepatitis B tests, 6 months apart. (I am still surprised at the number of parents who do NOT run the second test and assume that, because their child is negative at their first "after arrival" Hepatitis B test, that everything is OK. I am also surprised at all the people who assume a "negative" Hepatitis B test on referral paperwork is accurate.) Shortly thereafter, her pediatrician called with the word that she was Hepatitis B positive! Had we not been as moderately informed as we were, we probably would have taken it very hard. Instead, I started asking questions, based on what I'd learned. I think the doctor was surprised (pleasantly so) because, when I received a copy of the consult sheet from his initial phone call to me, written across the bottom was, "Mother is very well-informed about Hepatitis B issues". And to be truthful, I honestly didn't think I knew that much, but I did know enough to realize that first, our daughter was going to be OK and that, secondly, this wasn't the worst thing in the world that could happen to her (or us for that matter).
I made some calls to a physician from the University of Minnesota International Adoption Clinic and to Dr. Jerry Jenista. Both doctors were superb! They gave me some ideas for additional testing we needed to have on our daughter. It was also determined that she was NOT infected perinatally. If she was, she would have tested positive at that very first testing done shortly after she came home. More than likely, though obviously this is not known for 100% sure, she was infected at 2 months of age when they tested her for it back in China, for her referral physical.
We took her in for testing to check for DNA levels, liver enzymes, etc. We learned that she had a very active, chronic case. Her liver enzymes were elevated 9-10 times higher than what was considered normal for a child her age. That, I'll admit, was alarming in a way, but at the same time, my husband and I had a sense of peace about this entire situation. We had committed our daughter's situation to the Lord and we knew that whatever happened, He was in control of the situation and that He would take care of her. I would be remiss in not mentioning this, because our faith plays a very active role in our lives. I realize this isn't the way everyone looks at things, but that's the way it is for our family.
For the next 8-9 months, we had her tested at regular intervals and the situation remained the same--very high liver enzymes, continued Hepatitis B seropositivity, etc. Several months later, our daughter was referred to a pediatric gastroenterologist physician for a liver biopsy, as it was felt she may be a candidate for interferon therapy, which right now, appears to be the best "cure" for Hep B. However, it doesn't "work" all the time, so nothing is guaranteed. But it was an option. Since the hospital was out of town, my husband took her and I remained with our other children (very hard to do!). She had a liver ultrasound, which revealed no damage (they were surprised) and was scheduled for the biopsy 2 days later. In the interim, she had some more blood work done. She was laying on the table, IV in place, and waiting with my husband for the dr. to come in to do the procedure, when he walked in, newly-returned blood work results in hand. While she was still testing positive, her enzymes had taken a drastic plunge down to just 5-10 points above normal levels. There were some other quirky things about the blood work results that I can't remember, but the physician told my husband "something" was happening. At that point, with out the elevated enzymes, she was not a good candidate for interferon so he sent her home with instructions to have her retested in 6 weeks.
I'll never forget the day her pediatrician called, a very happy sound to his voice. Her blood work had come back indicating she was immune to Hep B, had normal liver enzymes, no antigens, nothing at all associated with being Hep B positive....in short, she had seroconverted. We were told spontaneous seroconversion in pediatric Hepatitis B cases occurs only 1% of the time. I have since learned of so many other families in our situation and am convinced, though I must stress I have no medical proof to back up my assumptions, that the rate is higher than 1%.
Our experience with Hepatitis B had taught us one thing--this was something we COULD manage in a child. So, when we adopted again, we put Hepatitis B down as something we would most assuredly accept in a child. No hesitation on that whatsoever!! And sure enough, when we received our referral, it was for a child who was Hepatitis B positive. We alerted the pediatrician ahead of time and made plans for what tests we wanted run on our new child and he made the comment to us, "If anyone can handle this, you two can." While that made me feel good, I realized we hadn't done anything special or that deserved acclaim, but what we had done was educate ourselves. That makes all the difference.
Our new child came home a few months later. When we were at the orphanage, the staff nurse made a point of telling me about the Hepatitis B, to which I replied that yes, we did know about it and had specifically requested this condition. She seemed relieved to know it wasn't a big deal with us (which it wasn't).
When the blood test results came back, our pediatrician called and said, "Well, you did it again" to which I said, "Did what"? and he said, "She seroconverted". He had a copy of the Hepatitis B results that we received, with the referral, and he had stated the same thing Dr. Jerry Jenista had stated after I faxed her a copy, that it was a regular, standard case of perinatal transmission.
My husband and I feel we have learned many things throughout our two experiences with this condition. I'll list them, but keep in mind these are in random order...
1. Hepatitis B seropositivity in a child is NOT the end of the world!
2. EDUCATION is one of the keys to dealing with this.
3. Vaccinate yourself for Hepatitis B.
4. Do not assume a negative Hepatitis B test at referral is accurate!
5. Don't forget to have two tests run 6 months apart.
6. Should your child test positive, have lots of literature for your doctor to read.
7. One of the best resources on the web is PKIDS, Parents of Kids With Infectious Diseases.
8. Should your child test positive, tell as few people as possible.
9. Maybe someone reading this would consider adopting a child with Hepatitis B status!!
I hope this has been helpful to some families. Please remember that it's our own personal experience and our own opinions. Every family has to choose to handle this in the way that works best for them. I'd be happy to answer questions if anyone has them. You can write me at firstname.lastname@example.org.
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